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Patient consent

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The journal received a case report for a patient presenting with a particular syndrome in which patients give approximate answers to simple questions. This syndrome has been considered as a dissociative condition but others have argued that it reflects simulation of psychiatric symptoms. The case report was an individual who had crashed his car and, following that, developed complaints of memory impairment and at psychiatric review this syndrome was diagnosed. The patient was reviewed by the authors three years later and showed a number of inconsistencies on examination. Furthermore, it was discovered that, despite the fact that he was unable to recall the day of the week or his own birthday date, he had successfully trained as an official sports umpire. The case thus provided good evidence that this syndrome may be associated with malingering.

The report was reviewed by the Editorial Committee and publication offered as a letter. It was noted, however, that consent had not been provided and this was sought from the authors. The authors explained that this was not available and the Editor explored the possibilities of publishing without patient’s consent, applying the

criteria of:

(a)

whether it was in the public interest to publish

(b)

whether all attempts had been made to anonymise

(c)

that attempts had been made to contact the patient

(d)

one could assume that the patient would provide consent if it had been possible to contact him.

It was certainly felt that the paper was sufficiently novel to be published but, despite attempts to anonymise, the Editor had concerns that the individual could be identified. Moreover, the authors indicated that they had not approached the patient as they felt that he would almost certainly refuse consent to publication as the authors had established that he was malingering.

The Editor felt that since it could be assumed that the patient would not consent to publication, then the paper would need to be withrawn. The authors pointed out that this would inevitably produce a publication bias as patients who simulated disease would rarely ever give consent; a view that the Editor certainly shared.

Was this the correct decision not to publish?

The authors have withdrawn their paper, pending discussion at COPE.

Advice:

While it was recognised that a case such as this, reporting for the first time an important finding, should be published for the greater good, any decision needs to be balanced against the possible harm to the subject of the case report if he or she is identified. It was suggested that one way around the problem would be to remove all forms of identification, including the names of the authors and their institution, but this would present problems in terms of ensuring an available audit trail. An editorial on the subject might be an option, but without using any of the data this would be difficult to produce. A more general editorial on the problems of lack of patient consent in certain circumstances such as in this case where individuals feigned disease, and how the failure to obtain consent could result in publication bias, would certainly be worthwhile.

It was generally agreed that the editor made a reasonable decision not to publish without the patient’s consent but it was a shame that he had to make that decision.

Follow up:

The editor fed back the views of the committee and the paper was withdrawn.